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Special Children, Blessed Fathers

October 15, 2015

I have this friend who is pretty incredible. He would defer to his even more incredible wife if I were to admire him to his face, and he would be right in doing so. But, saintlier spouse aside, this guy is pretty legitimately amazing. And if he’s reading this, he’s probably shaking his head and staying to himself, Jenny, stop with the bs.

But you know what? His kids are even cooler than he is. And they’re both card-carrying members of the extra chromosome club, a membership whose numbers are, sadly, dwindling. And not because someone has discovered a cure or furthered research that could prevent their suffering, but because their existence is fundamentally threatened by abortion, somewhere to the tune of 90%.

Because of fear. Because of the risk of the unknown. Because of a lack of knowledge and experience and compassion. Most of all, because of a lack of love.

Ironically, these two kids, despite the challenges they face and the unique parenting skills they require, are two of the most vibrant expressions of human love I’ve ever encountered.

It’s a strange thing to live in a world like ours, so lacking for love and so starved for affection and personal connection, and to realize that most of these precious children are being thrown away before they’re even born. Because they’re different. Because they’re “less than.” Because they’re not part of the script we’ve written for our lives, for our children’s lives. It makes the head spin.

It’s a little like imagining a firing squad lining up the best and brightest minds in the field of cancer research and taking aim. Makes you want to throw your arm out and scream: wait, we need them, there is so much suffering to be relieved, don’t do it.

Thank God, their parents didn’t go that route with Max and Pia. And because of that, JD and Kate were made parents, too.

JD was invited to contribute a chapter to a book by the same title of this post, and it’s good. His words are more eloquent than mine, and his experience far more personal. I can only stand on the sidelines looking on as a friend, watching how these children have transformed their family and their marriage. But JD is living it, and along with several other father-authors, he brings the experience to life on the pages of Special Children, Blessed Fathers.

It’s not a handbook on how to parent kids with special needs, but more of an expose on what special needs parenting can do to the heart of a father when he makes himself vulnerable and available to his child.

I once heard JD, who writes periodically for First Things, say “I don’t like when people say I saved my kids. It’s not true. They saved me.”

Well said, my friend.

(I’m giving away a copy of the book to a random commenter on this post. To enter, leave a comment and/or share this review on social media.)

Anne

Sarah Sidrys

Hi! I’d love to give this book to my brother and his wife who have a child with Spina Bifida. I know he would really appreciate it. Also, I went to Franciscan with J.D. and was in social work classes with his wife. 🙂 Thanks!

Melissa

CJ

Melissa, I just wanna give you a hug. My oldest has non-verbal autism too (although she’s starting to talk, praise God!) and severe epilepsy. She’s 9. We have 3 others younger than her. It’s challenging, and too many people say “no” after having just one like that. We were told we had a 1 in 10 chance of having another like her… which means we have a 9 in 10 chance of having a perfectly normal baby.

Robert

Jean

I know two mothers who have Down’s Syndrome children; one is a girl 17 years of age and functions at the level of a 6 year old, the other a 30 years old man and functions as a 2 year old.

Both mothers are faithful, extraordinarily loving human beings who have struggled to care for them at home. Both are Catholic and agree in principle it was the right choice to have brought their children into this world, but both have confessed that if given the choice to abort, knowing now what they didn’t know back then about what it would be like to live with and raise such a child could not say with conviction they would not abort if they had to do it all over again. Of particular concern to both moms is what will become of their children when they themselves are no longer able to care for them?

Their marriages did not withstand the pressures and exhaustion of caring for their special needs children while caring for their other children, their spouses were not as fully engaged in their care for a variety of reasons or were engaged but gave it up at some point. I agree it is heartbreaking to know many such babies are aborted because they are not perfect, but knowing firsthand what some people endure (not all, but many) it isn’t always because their babies aren’t “perfect” but because the reality of what their lives will become looms large ahead of them. This isn’t a matter of aborting because the sex isn’t the preferred one, or because the timing isn’t quite right. We have to be very compassionate in discussing this issue, particularly those of us who have never experienced it ourselves and not judge or condemn the mothers who do terminate their pregnancies. My heart goes out to all families who receive these diagnoses and I continue to keep them in my prayers.

Cami

I don’t even know what to say about this comment except that I can’t imagine Jesus telling these women to go ahead and kill those babies. And when moms are told their babies may have a special need when they are still pregnant, isn’t it just still a possibility and not a certainty? What about the babies who turn out fine and totally healthy? If they were aborted due to a possibility, then what?

Jean

You’re absolutely right, Cami, Jesus would never condone abortion. You’re spot on about the possibility rather than the certainty of any prenatal diagnosis as well. As a matter of fact I was in that position myself – offered an abortion due to a double digit percentage of fetal abnormality. My husband and I chose to continue the pregnancy and our baby was perfectly healthy, but we were prepared to accept him and love him no matter what shape he came to us in.

The point I was trying to make was that we need to have compassion for parents who don’t experience life with special needs children as a blessing or who admit if they had to do it all over again they would not have carried to term. I think these people are often vilified when in fact they are in as much need of support as those who respect their baby’s right to life. I apologize for not expressing myself clearly – I am 100% pro-life, always have been, always will be.

Cami

Wonderful! I hope this book gets to the masses. I just read that Rick Santorum wrote a book with his wife about their daughter who has Trisomy 18. Hoping that gets a lot of reads too. This gets me fired up! Kaiser Permanente Medical is big in California and growing here in Colorado it seems. I became pregnant with my first baby 5 years ago and was horrified in watching their “Congratulations on your pregnancy… and by the way, if testing determines a risk for abnormality, we offer termination services” video. I was also told I miscarried and was “empty” early in my first pregnancy only to find out 6 weeks later I was still pregnant with a healthy baby. Praise God! But it didn’t exactly build my confidence of the integrity of KP. Thrive? Really? Marketing is such a sham. People aren’t even aware they are being fearfully lead into the culture of death. I’ve met many women who are very impressionable by (and trusting of) non-pro-life doctors who push testing to show parents a “potential” possibility of defect/disability and are swift to encourage abortion. And of course the women are frightened by being over 35 and high risk, with an even higher risk of downs. And yet, I’ve never met a family who didn’t absolutely cherish these special people in their lives. I’m sure care-taking requires a lot of these parents but as we Catholics often point out, the self-donative relationship is quite fruitful and helps mold us into who we need to become. God bless all the families who’ve welcomed these sweet babies into their lives and their hearts. I pray for their stories to transform the hearts and minds of those so fearful of these scenarios and willing to take drastic, soul-damaging measures to prevent them.

I and my entire family, 7 kids in all, are better people because of my youngest child. Even though he is a lot of work and it does take 2 of us to care for him, he is a blessing. I do believe God chose us to take care of him because he cares about our souls.

Erika

I would love to have a copy of this for my dad, who has struggled with my youngest brother’s disability for his entire life. I may have to make it a christmas gift anyway! As a social worker and educator that loves this population, it makes me nauseous to think of the number of lovable children who are terminated each year because of prenatal testing. I’m expecting my first in the spring and can’t imagine terminating this little raspberry I already love so much just to prevent hardship in the future!

Cami

Patricia Kuster

I love seeing a book based on Catholic faith and children with special needs. I am a pediatric nurse and have worked extensively with children and families. I felt the most rewarded when I cared for children with genetic disabilities, they teach us so much about love for others.

Rebecca

I would love to give this to my dad! My three siblings (all of whom are older than me) have a genetic disorder called Fragile X and have varying capabilities and challenges, and both my parents have loved and cared for them so well. My dad in particular is so patient and faithful and takes my brother out of his group home for a “date” every Friday night.

Pat McCarthy

We have a beautiful young couple in our parish who have a newborn little baby boy who has Downs and the associated heart issues. They have three precious little girls and had a stillborn baby boy a few years ago. They always refuse the triple screen test that tells a pregnant woman she is carrying a child with birth defects. They love little Geo so much. I would love for them to have this book.

My husband is absolutely the most amazing man in the world. He is disabled and suffers greatly but still, he does most of the work caring for our teenage son. He has autism, epilepsy and has regressed so much, he can no longer walk or talk or feed himself. It takes two people to care for him. My husband is a saint! <3

Pamela

I’ve recently just found your blog via a friend & I absolutely love how unapologetic you are regarding your views, especially the less than PC ones! It is hard to constantly be on the unpopular side and you remind me that it’s important to keep fighting the good fight. Thank you!
Also, I would love a copy of this book!